Health Organization for Pudendal Education

Charlie 123, Can you tell me how long you had to wait to get the nerve block done after you first saw Dr de Mello? My referral has gone to him but I haven't yet got an appointment. Did you have that done at Wythenshaw too? Did he request an MRI and if so where did you have that done? My GP is putting off getting me an MRI thinking that Dr de Mello will do it so it won't come out of the GPs budget. I'd rather have one NOW (OK I know there is no NOW on the NHS)so I have results to take to him. After 9 years I can't wait to see him. I just hope I'm not praying for too much.

Helen, I think you've just explained it all very clearly.

Would I be right in saying that the PCT is sticking on this because they believe you've had your consultations and treatments privately? - seems they've 'learned' this from the GP?

My husband has just suggested that you involve your local MP in this. Might be worth a try, at least?

(I know it is different, but my lad with the brain injury had a lot of problems getting DLA after he came out of hospital, they disallowed his application because it was too long since the accident or some such nonsense, telling them he'd been in a coma did not help, they just said well his family should have applied on his behalf. We had not been exactly thinking about that, in fact it had never occurred to us, we had been more concerned with whether he would live or die. Anyway my lad wrote a letter to our local MP and all was resolved in very short order. )

Helen I am shocked by what you have told me . Incidentally my lovely gp told me to stop any Pilates as it is one of the most common causes of vulvadynia (nerve irritation!!!) in women. she's a clever lady .

I feel sad that your gp is prepared to give up on you with this condition . It's so uncaring . Especially when little is understood about it (apart from those few specialists). What does make me cross is that if a nerve is compressed surely to decompress it ASAP will give a better outcome . Perhaps it's because we don't have a physical disability to see why some clinicians underestimate our suffering.

Poppy, I saw a neurologist and had a full screen for ms including an mri at the hospital. Mr de mello wanted this excluding in my case first & foremost before seeing me . I was able to see him privately & then listed for an injection . Yes it was done at whythenshawe. Think I waited a few months (Brain strain getting the better of me these days). Not sure if I'm right but I don't think a gp can order an MRI - I think it has to be a consultant.

All the best
Charlie123

Thanks for the advice Calluna. I know exactly what you mean, people, like us who have always worked and just got on with normal day to day, and are not ever involved in 'the system', have absolutely no clue how it works. Unfortunately, we do need to learn quickly, but that often comes at a time when more important matters present, in your case unbelievably so! However knowing how 'the system' works (or not knowing rather) can have major consequences. So glad you got your MP involved and more importantly got the matter sorted. We would be chaining ourselves to railings however if you hadn't !!!!!!
Now I sound like I am some sort of activist no wonder my GP is so dreadful with me But that's only with things that truly matter .
My GP has decided to write to Dr G to ask for 'clinical reasons why I need this referral', as you say Poppy, the longer a nerve is trapped. . . . . seems a bit obvious to me. But at least she has decided to be pro-active and I will allow her this last chance. (mug that I am !)
The trouble has been compounded because a local neuro guy, in the beginning, said I had degenerative disc disease , mainly because he was blaming my lumber spine for the issues I have and couldn't see any nerve impingement in a spinal MRI. I think in my GP's eyes he can not be wrong, he is a neurosurgeon after all and how DARE I question him. The fact that during my examination, he took absolutely no notice of where my pain was situated and was so 'stuck' in his own specialty, cuts absolutely no ice it seems. I didn't have a clue about pelvic stuff then, it was only when I found sites like hope (thanks ) that I had that
EUREKA moment.
Of course the fact that there IS no spinal nerve restriction means that my problem is not that acute?? She probably thinks that I am a malingerer to some extent too, although I hardly ever darkened the doctors door before all of this. I can't seem to win at the moment, but I will !
What about the people without the tenacity or ability to get beyond an inaccurate diagnosis. Thank goodness for the Dr G's and de Mellow's etc, that's all I can say.
Maybe you should ask Dr. de Mellow's secretary if you need any MRI imaging before your appointment with him Poppy. It would be advantageous, obviously.
So pleased you have a lovely GP Charlie, she is worth her weight in gold .
Take care all
Helen

PLUS!! after reading again

calluna wrote:
Would I be right in saying that the PCT is sticking on this because they believe you've had your consultations and treatments privately? - seems they've 'learned' this from the GP?

I think you are partially right with your summation here Calluna. The whole thing is so mixed up in my head now I find it difficult to know where to turn as it has become so convoluted, so thanks for at least highlighting this as a reason.
As I say it's only part of it because although she (since my official complaint ~strange eh!!~) has actually apologised in a reply/response letter, for not supporting me, or rather for me feeling that she has not supported me (my fault ) Since that, she still then picks out THE MOST NEGATIVE bits, to hinder my case rather than any positive, helpful stuff, in any correspondence with the PCT.
For instance, Dr G's last letter said all of my symptoms don't add up to piriformis+pudendal+sciatic involvement and thought I should try CBT, mindfulness and relaxation techniques (which is fair enough) as I may have some muscle/nerve 'wind up' (as they say) which may be able to be rectified by these techniques.
He added, unless there is some post femoral cutaneous nerve involvement too, which could explain everything.
I wrote back to him saying that given what I had gleaned from info here and the internet, he may be spot on with the PFCN idea. It was something I had been looking into for a while now. I gave him certain reasons and indications of symptoms that I do have that may help pinpoint this nerve's involvement. We learn all of the time don't we, or get more confused .
However, in my GP's attempt to rectify things and aid(LOL) my referral, all she mentioned in her last letter to the PCT was something like, "as outlined earlier by Dr.G" in her (GP) earlier correspondence," Mrs H has NOT had any CBT?/mindfulness/relaxation therapy".
Well who's fault is that!!! Errrr, was it ever offered or mentioned?? I have been to see her quite a few times in the last 4 years (lol,again with irony) and although I was happy to try ANYTHING that she offered or suggested, nothing (apart from the suggestion of pilates) was forthcoming. I doubt I even have a care plan. I'm over 50 have had a back problem in the past so her answer is. . . . . . SUFFER!
I read her last effort to try and rectify things and just thought, "EEeeh, don't bother pet!" (northern) Everything she put's on paper, simply point's to the fact that I don't deserve this referral at all. It's as if it is her money!
All of 'our' last communications have been through the practice manager,(you can't fault me for at least trying to make amends) not face to face and I am amazed at just how focused on my back my GP still is and how little she knows about what has been happening in the interim, even though she has all of the reports from Dr G etc. and the HOPE letter about PN + +. I doubt she even read it! This 2nd hand 3 way conversation is ridiculous and time consuming nonsense but every time I have had an appointment I can't help but be so respectful and god damn nice!! I annoy myself. At one time I even offered to design her kitchen (for refurb/sell) nitwit that I am!
I still don't know the answer to this conundrum. All I know is that I will win through, it's just going to take some time
Fingers crossed that you hear from Frenchay soon.
Helen x

Hi Helen

Sounds like you have had a difficult time of things.

I to am under Dr G, having my 2nd injection under CT guidance at Southmead Hospital Bristol on the 23rd April.
I paid privately to see Dr G at St Mary's Bristol and had US guided inj in clinic in March.
Plan was 3 inj +/- decompression surgery, which by the sounds of things will be very distant now if required.
At the time of my Private ref my GP copied the same letter to Dr Gs NHS secretary, a dual ref.
For treatment out of area the PCT does have to agree to NHS funding however this is up to your GP to arrange, not you!
Wether or not you have had a private consult is irrelevant, you are still entitled to NHS treatment.
Exceptional circumstance is that only 3 people treat this in the country!
Sounds like your GP is the crux of the problem, not you. They sound obstructive, perhaps they just can't be bothered, after all applying for funding takes time & effort on their part.

Have you thought of changing GPs?
Maybe we should start a list of Pudendal friendly GPs on the site?
I am lucky really, my GP is open minded, he is using my case for part of his appraisal demonstrating his ongoing learning.
There are good GPs out there, it's finding them.

Regards Lex1

Thanks Lex1,
Nice to know that you have had a smoother ride , we have been down a similar route, with a private consult, just my GP seems to think it's her own money, or doesn't believe me?? I even asked the question 'does she not like me', to the practice manager but I'm sure you are right, she and at least one other GP at the surgery is simply close minded. If I could 'interview' potential GP's I would switch in a minute but I am worried that I end up in the exact same problems but right back to the start having to explain this complicated issue.
I have written my GP a letter today so will see what that brings. She gas promised to write to Dr G about clinical reasons why I need surgery. This info on Bristol PN surgery was second hand, although I have no reason to doubt it, but maybe the problems will be sorted out sooner rather than later.
Hope your shots work and the need for surgery is avoided.
Take care,
Helen

Hi

I'm seeing Dr Greenslade for my next check-up on June 20, so if this issue isn't resolved by then (what do I mean, if?!) I'll get an update. Fingers crossed it's sorted out soon, I could have gone privately for my surgery, but know that it isn't an option for everyone suffering with PN or PNE, so hope no-one has to wait too long if they're already on a waiting list.

Andrew

I'm due at Frenchay, Bristol next month. If I can provide a useful update on anything discussed here, I will post. In the meantime I wish everyone much success with treatments, and much relief.

Hi update on Bristol

See Dr Greenslade last week

Surgery not suspended due to lack of funding but because it has to pass through the ' new procedures panel 'at Frenchay.
Apparently process take 12 months once submitted to the panel, which at the moment has yet still to be submitted by the managers responsible!

Essentially means > 12 months wait for decompression surgery on NHS

Does anyone know where and how to apply for funding to go to France for surgery?
Costs?


Regards Lex